Any parent will agree the statement everyone is wanting to hear after the birth of a child is.... yes, he/she is perfect 10 fingers and 10 toes, He is 7lbs. and 11oz, and a whopping 21 inches long at 32.5 weeks. What happens when that is all that is perfect about your child? There is silence in the room, he's not crying, why is he not crying? The curtain closes and a team of neonatal specialists fill the room, whispering, hurrying, no one is saying anything to me. A nurse comes over with this little blue baby after what seems like hours and says here is your son... I am sorry you cannot hold him very long we HAVE to get him on oxygen right now. In shock I say, "take him now then wait for nothing!" Little did I know I missed my chance to hold him and would not get to until he was almost a month old. No one ever expects a child to be born with so many hurdles in front of them, even the most qualified and over trained specialists and MD's cannot tell you if your baby will be coming home with you. What happens then?
For me that was my reality. My first born child, no one had any answers, no one could tell me he would be OK, no one could say he is going to be fine. Just saying he is a fighter he has a strong soul and adding as long as he stays on top of the eight ball....what does that mean?! I have to say Tx Children's NICU is a phenomenal place, the best child care for sick infants, and this is where I sat for 3 weeks.... living, in the unknown. Tubes, EEGs, Nitric Oxide, ECMO, MRI's Echo's, needles, blood drawn for every test in the world. For the first 2 weeks I could not even touch him. They (the Dr's and nurses) would not let me, every time i did his little body jumped his scores dropped and rose to dangerous levels. All I could do was watch his lifeless drug induced comma body and pray. When all I wanted to do was hold him and make it all better.
For me that was my reality. My first born child, no one had any answers, no one could tell me he would be OK, no one could say he is going to be fine. Just saying he is a fighter he has a strong soul and adding as long as he stays on top of the eight ball....what does that mean?! I have to say Tx Children's NICU is a phenomenal place, the best child care for sick infants, and this is where I sat for 3 weeks.... living, in the unknown. Tubes, EEGs, Nitric Oxide, ECMO, MRI's Echo's, needles, blood drawn for every test in the world. For the first 2 weeks I could not even touch him. They (the Dr's and nurses) would not let me, every time i did his little body jumped his scores dropped and rose to dangerous levels. All I could do was watch his lifeless drug induced comma body and pray. When all I wanted to do was hold him and make it all better.
Prayers were answered and 4 weeks later, after progressing from critical and unstable, to stable, to serious and stable, to just a preemie on a different floor, my son gets to come home and is now a thriving 1 and a half month old baby. They tell me he is fine minus the PVA whole in his heart, he should catch up in a years time and life will go on BUT, only time will tell what his remarkable birth will mean for him down the road. OH and by the way make sure he does not get any serious colds his baby lungs have gone through a lot and we don't want him to have any set backs. GREAT! I mentally block the proverbial "BUT" and move on. Keeping him healthy and dusting and cleaning and sanitizing everything and then....at 8 months old he gets RSV. Are you serious?? It's not a cold, not a serious cold, no no it is the big momma of all colds the ONE looming thing that could still take him from me.... HE GETS IT. Dammit, I thought I was done with this! So I spend 2 months every 2 hours holding a tiny little mask connected to nebulizer over his face awake or sleeping, praying fervently that he will over come this too. Which thankfully he did, and paddles on with out further incidents.
He doesn't learn to walk until he is well past the age of 1 more like 18 to 2 years old but, this is OK. He is a full functioning LIVING gift and trucking right along toddler.It is right around this time that I realize his remarkable birth history is writing his future and will show its ugly head when it wants to. Here I am a newly divorced mom with brand new twins and my little Logan. Dad couldn't take the stress of it all. Really, this is how you want to play God, you think I can do this ALONE OK bring it on. Logan starts school early because my child, my precious miracle baby cannot speak intelligibly at the age of 3. It is worth mentioning my mother took great pride in the fact that his very first sentence at the age of 3 1/2 was " I love you Nanny" So off we start with the first round of tests he has been though since birth. minus the ultra sounds on his heart to check on the progression or lack there of of his hole. On to speech therapy we go and he surpasses all the his goals with in 6 months!
YAY another obstacle overcome! Well not really. Where he can now speak fairly well and has gained an extensive vocabulary after 2 years, at the age of 6 cannot read. You cannot read his hand writing and he has started acting up in class. Fits galore, hiding under his desk, bathroom breaks, water breaks, tantrums, anything to get out of reading or writing. More therapy is what "they" say he needs, reading resource and continued speech because he still has issues "finding" the right words to say. I take the time to explain... Baby, I know its hard and it is frustrating but you cannot act out in class this will only get you into trouble. Just work with me here and I promise I will find out what makes reading and writing so hard for you. It's not working, he continues to make very little progress and more testing is in order, PT's, OTs, Speech therapists, behavior specialists, Neurologist, NeuroPsychologist, Special Ed Teachers, they want to do more brain scans!
Now me, lost and looking for the proverbial key to his Pandora's box. Why can't he read? He is now 7 and half, he can't retain a word he KNOWS from one line to the next, every sentence is a battle, every word seemingly new, writing..... oh Lord... up hill here we go again!!! WHY!? look at him!! He is 4.5 feet tall and 80 pounds at 7 and half,a huge, healthy child. When he speaks he SOUNDS very intelligible, can say his math facts, spell a loud, and tell you anything you want to know about any animal ever filmed and showed on the Discovery Channel. But, he cannot play sports, tie his shoe, read, write, or interact with children his own age appropriately. So now, here we are, seeking the help of yet another specialist to help explain and maybe give us a path to travel on for learning and succeeding in life. They want more tests and we go to Albuquerque and meet with several Dr's. We have meetings do all day testings over the course of weeks to get a diagnosis. Their diagnosis....ADD. What? you are kidding me? My son who cannot read, cannot write, along with so many other issue but can sit down and play a video game for an hour is ADD. OK, but there is something more to this right? Well yes, we ( the Dr's) agree we want a brain scan and more testing. Glad to know you are as fascinated by it as I am, and a little concerned that this will turn into a clinical study and medical journal article of acclaim for you, at the same time. I tell him they want more tests, not my concerns just the test. He is old enough now to understand what is going on and my son at the age of 8 says NO! He is done, no more tests, no more pictures, no more needles, just no. How do I make him go through it? I cannot, everyone else wants a label not ADD a bigger better fitting label, but not him and now not me.
I realize through all of this, this is my pain, not his. My son for an unknown reason has to over come SO MUCH, when does he get to be a little boy? This is my angst, not his, he does not feel the pain I feel for him, he doesn't worry about being just a kid and, for that I am glad. He is a little kid, he is living his life the way he wants to and I'm good with that. Because in spite of all he doesn't have , I have a son who has the heart of a king, he is kind, loving beyond belief, a protector, a big brother, a savior to the under dog, and challenged in a way I cannot fathom. He knows he is different, he KNOWS he is not the same but, HE is not caught up in it. So what if we never go watch him play a football game, or have a huge party with numerous friends over? He is good with it so, why can't I be?
What did I do to become so blessed with the most amazing gift I have ever seen? He teaches me so much about life on a daily basis. He is a fighter, the pillar of ultimate strength. Where I want him to be "perfect" he will never be, but in so many, many ways he is so much more than perfect. He is my son, my precious little gift from God, my daily lesson in humility,humanities, honor, and love. He IS.... Logan
